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New to TN, does anyone get bad headaches from their facial pain?

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Old 11-12-2011, 07:03 PM   #1
Join Date: Nov 2011
Location: Mid Michigan
Posts: 3
angelman003 HB User
New to TN, does anyone get bad headaches from their facial pain?

I am hoping someone that has Trigeminal Neuralgia can give me some insight here. I was diagnosed with this at the end of last week. This has been my experience.

About two weeks ago i was sitting on the couch and was rubbing around my temple on the right side of my face. It felt like I had hit my head - but I knew I didn't, it almost felt like there should be a bruise there. a few days later I asked my husband to look for me. He didn't see anything. Then, a week ago from last Saturday we were in the car and I felt my top lip on the right hand side go numb, exactly like i had been to the dentist and he numbed it. I knew that didn't happen either. than, on Monday my cheek started to hurt,, kind of. It was more of a dull, stabbing, pulsating pain. It then went to my jaw bone. And then, my right eye started to water, it was only my right eye, my left eye was fine. in fact, during this entire experience, my left side of my face has been completely unaffected. In the last few days my right eye has been twitching sometimes and my lip twitches sometimes.

So, getting concerned I went into the walk in clinic I go to sometimes. I had just gotten over strep throat and initially thought this all could be a bad side effect from the antibiotic ( one i had taken before and never had any negative effects from it) they had prescribed me. They thought it wasn't a bad side effect and brought up TN as a possibility. They said they had never seen a case of it, and certainly never diagnosed it, but they thought this could be it. From what i have read since then, i'm surprised they even ever heard of it.

Since then, i have been reading up on this. I plan to go get an MRI and other testing done to rule out some other things. My question is, when people are affected by TN, do you get pretty bad headaches? Or is it the facial pain that is unbearable? or both? Earlier today was the first time I can say my entire head seemed to hurt. The facial pain was only on the right side of my face, but my headache was across the front of my skull it seemed like. the pain was so bad I couldnt' exactly tell where it was coming from or even what kind of pain it was (throbbing, crushing, etc) I just know it hurt and it hurt bad. cold wind seems to make my face very painful. today was the first day I got a horrible headache, it really hurt badly! Im sure i don't have to tell people who suffer from TN how badly it hurt. In the last few days it seems like i won't have much pain for an hour or two and then it comes quick and bad. The right side of my face always hurts except when i sleep and usually when i wake up it feels pretty good, except this morning, this was the first morning i was uncomfortable.

I have also read this can come and go,, where people will have periods of no pain. Do you find this accurate?

I would appreciate hearing about any experiences anyone has had with this.

Thank you so much for any advice or comments

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Old 11-16-2011, 06:59 PM   #2
Join Date: Sep 2011
Location: Presque Isle, Maine
Posts: 1
ShivaWolf HB User
Re: New to TN, does anyone get bad headaches from their facial pain?

I have had chronic pain, migraines (started in my 20s) than cluster later in life...approx 6 to 8 years ago I started with my left side face pain. I had seen a neurologist for my chronic head pain (reg. docs dont like to prescribe pain meds unless seen my a neurologist that confirms-yes i am in pain yes i do need pain meds) well my left sided face pain had just started.
I felt pain with very light touches to my face, my hair, the wind, a drop of rain set off the pain. Initially the pain could best be described as if I had a deep sliver and the touch would be as if touching that sliver that u couldnt see but must be deep and next to a nerve. idk so hard to explain. then it evolved (o so he dx it as atypical left sided facial pain. wow) it progressed to feel as if touching it were touching a horrible burn..always the left side. shortly after that my left ear would feel as if there were an ice pick driving into my head and the pain over the eye, under, the cheek bone...felt as if I had deep lacerations. Which is where I am now with the pain.
The pain is intermittent, lasting a few days in a row or a few hours. Never any type of pattern and of course the lightest touch will set it off.
I was at the point my dr needed me to spend money for a neurologist to tell him yes i am in pain and yes i need my medication. The stadol nasal spray is the only thing that will work with my face pain and I have pills for my other headache pain.
Anyway I just saw the dr. a week ago and almost immediately she diagnosed Trigeminal Neuralgia, or Tic douloureux. As for my other headaches she suggested that if I cut out caffeine and the pain meds my 'migraines' would go away!. well I have been without insurance and have in the past no money for pain meds and surprise surprise i was still in pain. Anyway she agreed with my taking stadol for the intense face pain.
what she does not understand and what finally answers your question is YES the TN sets off horrible headaches/migraines or what ever u want to call a knock down -dark room-leave me alone or give me pain meds that is where the stadol is a life saver. life saver because i can have a life if I can get rid of the pain.
i did have a history of headaches prior to the TN but I def. see a correlation between the two. I can have horrible migraines without the TN but if i have the TN and dont kick it out with the stadol than its a guarantee I will have huge head pain.
she also said that TN can be caused by enlarged blood vessels pressing on the nerve (which there is a surgical procedure to get rid of those -in a hospital that is a 3 hour plane trip to get there) plus no insurance. OR it could also be MS (spec where it is progressing) Or it could be a tumor...all of which cannot be dx without an MRI (that is a 3 hour ride where she also is...but I would rather go down there for the mri because in order to find out what she needs to accurately dx she needs the high resolution images that is not found with what is available up here.
O and the thing can cost $ of course another $400 visit to her office to go over the results.

Sorry for the rant..haha but yes to ur question.
kind of nice to get that off my chest as all the people I know have no clue what I am going thru and I feel as if they're like sure sure ur in pain...spec when i need to get my meds..

Old 11-17-2011, 10:52 AM   #3
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 19,265
Titchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB UserTitchou HB User
Re: New to TN, does anyone get bad headaches from their facial pain?

My sister had TN and had the surgery in Pittsburgh - at the clinic where they invented the procedure. It worked beautifully for her. That was 10 years ago and she's still going great.

Old 11-17-2011, 05:04 PM   #4
Join Date: Nov 2011
Location: Mid Michigan
Posts: 3
angelman003 HB User
Re: New to TN, does anyone get bad headaches from their facial pain?

Thanks for such great replies!

I have since had a CT scan done, no tumors and no anyrism's were found. I am thankful for that.

Since I posted this the pain has subsided a bit. After the CT scan was done, the doctor referred me to a Neurologist. Yesterday it was pretty windy where I live and by 5 pm the right side of my face hurt. It was past the point of dull pain and felt like it was burnt. What my doctor said was after the test, we just have to wait and see if it comes back like it did before.

If this is what I have, i know it's mild now. I just can't imagine the pain you must be going through.

Thanks again for the great responses I got!

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